FSR launches enhanced version of its sarcoidosis patient registry
Improvements aim to maximize impact of participation in research
The Foundation for Sarcoidosis Research (FSR) has launched an enhanced version of its patient registry, FSR-SARC, to help maximize the impact of patient participation in research.
“Now in its tenth year, the Registry has been one of our most powerful tools to elevate patient voices in the advancement of sarcoidosis research,” Mary McGowan, FSR’s president and CEO, said in a foundation press release. “The enhanced surveys and platform represent a significant step forward in our efforts to drive innovation, elevate patient-centered drug development, and improve patient outcomes for all impacted by sarcoidosis.”
FSR registry connects patients with clinical trials
Sarcoidosis is a rare inflammatory disease marked by clumps of inflammatory cells in tissues and organs. These clumps, called granulomas, can impact bodily functions, and may cause permanent damage over time. Symptoms can vary depending on the impacted systems.
As a result, there are many open questions about how sarcoidosis impacts patients’ lives and how to treat it. With FSR-SARC, which currently has nearly 7,000 participants from 68 countries, the foundation aims to collect data to help address these questions while increasing patient representation in research.
Patients and caregivers can sign up to contribute to FSR-SARC by providing health information and completing surveys. The new platform, a partnership with Across Healthcare, will empower patients and caregivers by allowing them to report on their own experiences more easily, according to FSR.
The foundation also hopes to broaden the participant base so the data can accurately represent a range of experiences on sarcoidosis variability, progression, and burden.
Through the new platform, FSR can connect participants with clinical trials and other research opportunities for which they may be eligible. Scientists can also use anonymized registry data in their research, subject to approval from FSR experts.
In the U.S., individuals can now optionally link the registry to online patient portals to securely share health records.
Several studies have used registry’s database
Safety and privacy are a priority in the enhanced platform, which complies with the Health Insurance Portability and Accountability Act to protect sensitive health information.
The FSR-SARC Registry is currently available in English, but the foundation plans to translate it into new languages.
Several studies have used the registry’s database to increase knowledge about sarcoidosis and its impact on people’s lives.
Analyses of participants’ data have suggested that white women with sarcoidosis and involvement of several organs may be at a higher risk of low thyroid gland activity, and have identified chronic pain syndrome and disability as common disease manifestations in the brain and spinal cord.
We are immensely grateful for the extraordinary commitment of the sarcoidosis community in giving of their time and insights to inform and drive sarcoidosis research.
Other studies showed that clinical presentations are different between Hispanic and non-Hispanic sarcoidosis patients. This further emphasized the importance of actively recruiting diverse participants in studies and understanding how to tailor therapies appropriately for different groups.
With expanded data from the updated registry, scientists may be able to probe new questions as well. The foundation also supports research into animal models of sarcoidosis and developing clinical benchmarks for sarcoidosis care.
“FSR is committed to empowering patients and accelerating research through the FSR-SARC Registry,” McGowan said. “We are immensely grateful for the extraordinary commitment of the sarcoidosis community in giving of their time and insights to inform and drive sarcoidosis research.”
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